Lillie-Mae Jackson was just 14 weeks old when she developed a runny nose and got the shivers. She was cold, had a hoarse cry like a sore throat and was sleeping longer than usual.

With no initial signs of meningitis - like the well-documented rash - doctors initially thought Lillie-Mae had a cold.

She soon developed a pin-prick rash, bruise-like marks and was dozing in and out of sleep, the ambulance took two minutes to arrive.

Lillie-Mae, from Maryport, was critically ill and taken to Newcastle’s Royal Victoria Infirmary. Doctors would only give her a two per cent chance of survival.

Her parents, Belinda and Rupert Jackson, had to go through the emotional trauma of being asked to turn off Lillie-Mae’s life support machine. But they had faith in their daughter and, despite the amputations of both legs and an arm, Lillie-Mae continues to live a full life.

Her mother Belinda said: “Lillie-Mae is amazing. She gets us through it - seeing her so happy. If she wasn’t the person she is we wouldn’t be able to get through it. She shows us anything is possible.”

Now eight, Lillie-Mae is very much looking forward to taking part in the Rock Challenge final at Grimsby with her school, Maryport Juniors, in June.

Belinda said: “We have our ups and downs. Getting Lillie’s legs on can be a problem. Sometimes she gets dry skin on the end of her stumps and it gets sore. With sores we can’t put her legs on and people don’t understand and say why doesn’t she have her legs on?”

“I wish everyone could live a day in our lives and see that every kid is different.”

Lillie-Mae has just had her annual review at the hospital and been told that she will need two operations this year.

Belinda found help and support from the Meningitis Trust to be fantastic when her daughter was ill. The trust, now called Meningitis Now, came out to the family once a month.

She said that the rash that is always mentioned as a sign of meningitis is more of an end of life indication and feels that the public might get misled that they have to wait until there is a rash before taking action.

Her advice is to go on instinct: “Whatever their gut instinct is they should go with, no matter how many times you have to ring the doctors. If you think something is wrong, get an ambulance. Call 999.”

The Beattie family, from Whitehaven, has also been touched by meningitis.

Elsie Beattie was just nine months old when she contracted pneumococcal meningitis in 2015. Her parents rushed her to West Cumberland Hospital where she received treatment for several days before being transferred to the RVI. The left side of her body was not responding properly and she was suffering from fits.

After 10 days Elsie returned home, but it took many months before she could walk and use her arm again.

Elsie’s dad, Andrew Beattie, who is a former Workington Town rugby league star, said that the only lasting result of his daughter having meningitis is that her arm sticks out a little occasionally.

He added: “She’s absolutely amazing. You wouldn’t know except for picking up toys or when running her arm sticks out a little – that’s the only thing that you notice.”

Elsie is four now and doesn’t really remember anything about her ordeal. Andrew and her mum, Diana Beattie, ensured they acted as quickly as possible when they suspected something was not right.

Andrew said: “People worry about the rash thing but that is the end point. Elsie didn’t have the rash. If children are doing things that they normally wouldn’t that’s when to act, especially if it’s a tiny baby - they can’t say how they are feeling.”

He said that Elsie’s temperature was over 40 degrees and she was making strange noises. Her eyes had glazed over. He said: “If people think things are not normal they should go. Keep an eye out for warning signs first.”

Meningitis Now has a range of support services, including financial, practical and emotional backing for people of all ages affected by meningitis.

Expert advice

Meningitis and septicaemia often happen together.

Signs to look out for in adults and children include: Fever, headache, vomiting, diarrhoea, muscle pain, stomach cramps, drowsy - difficult to wake, confusion and irritability, severe muscle pain, severe headache, stiff neck, dislike bright lights, convulsions/seizures, pale blotchy skin, spots and rash.

A rash that does not fade under pressure when pressed with a glass is a sign of meningococcal septicaemia and fever with spots/rash that does not fade under pressure is a medical emergency.

For more information visit the Meningitis Now website at

There are an estimated 22 cases of meningitis each day across the UK. The disease can strike in hours, but the after-effects.

The charity is keen to use World Meningitis Day to promote its range of support services, including its recently-launched Rebuilding Futures Fund, which provides financial, practical and emotional support for people of all ages affected by meningitis.

Dr Tom Nutt, chief executive of UK charity Meningitis Now, said: “We’re not about quick fixes; we’re here to provide tailored support with long-term impact, that will really help people and families to rebuild their lives after meningitis,”

“We’re proud to provide this unique, life-changing support – the only meningitis organisation to do so in the UK.”

The charity also fund family days – regional fun days out for families affected by meningitis – and the Believe & Achieve programme especially for young people.

Meningitis Now is also launching its first Facebook fundraiser on World Meningitis Day to help fundraise for that support and calling on the public to contribute if they’re able to and make a difference for those impacted by meningitis in the future.

If you have been affected by meningitis or would like more information, call the Meningitis Now helpline on 0808 80 10 388 or